What to Expect When You're Not Expecting It

My regular readers (all three or four of you!) know that last fall I had a baby. And then spent the next two months in the Neonatal Intensive Care Units (NICUs) in two different hospitals as he underwent radical surgery and then recovery. While I knew several people whose babies had been in intensive care, it never even entered my mind that mine might have to go. I'm not even sure I really knew what the NICU was; I certainly had no idea what it was like. But here's the kicker: nobody else did either.

Now, some of the people we met at the Ronald McDonald House and in the NICU knew before their babies were born that they were going to be spending a long time there. Their babies had conditions like Hypoplastic Left Heart Syndrome or Esophageal Atresia, which can be detected before birth. But even forewarned, those families were just as lost and confused as we were.

There are some good resources out there for NICU parents. In large children's hospitals, there are support groups within the NICU, not to mention social workers and other human services types who are there specifically to help you get through it. The March of Dimes has an excellent web site for NICU families, and BabyZone offers a good NICU Survival Guide. But they're not the kind of thing you typically go surfing for until you really need the information.

This list isn't intended to be as comprehensive as those; it's just a list of some of the things I wish I had known about the NICU experience--otherwise known as Top 10 Things I Wish I STILL Didn't Know, and Hope You Never Do. :-)

1. From the moment your baby is sent to the NICU, you can toss out your expectations of what things would be like. If you were planning to breastfeed, you might be disappointed: your baby might be on an IV or in an incubator, and you will have to start out pumping, often in a tiny sterile room with fluorescent lights buzzing overhead and people knocking on the door every few minutes. Depending on hospital policy and your child's condition, you might not get to assume any infant care for a long time. Most hospitals seem to encourage parents to take on as much of the care--diaper changes, baths, clothing changes--as they're comfortable doing, but some of it might not be practical at first. And you might find yourself assuming infant care duties you never expected to have. For me, changing a gastrostomy tube was never part of the scenario I imagined when I was pregnant and thinking about caring for my infant son, but here we are.
   
   The bright sunny day will come when you get to triumphantly bring your new baby home to the freshly painted nursery and snuggle up in your brand new glider to rock your baby to sleep. But that day won't be as soon as you thought, and before it gets here, you'll have a lot of other experiences you probably weren't counting on having. It might be best to face this early on and deal with it however you can. (It took me weeks and a tough conversation with a realistic nurse to start coping with the loss of my expectations.)
   
   Oh, and also? You're only the newest mother for a day at most, and after that you probably won't get a lot of special consideration for things like the discomfort of your cesarean incision or your episiotomy. It's a good idea to carry a pillow.



2. Nobody will tell you the basic things; you'll have to ask. For example, nobody will tell you where to put your stuff. Ask a nurse where you can put it. We had a constant struggle over what to do with our coats, camera, etc., and usually ended up putting them on counters or even on the floor, and always, always taking them with us when we left the room. You'd think a hospital would be pretty secure, but both NICUs we were in had rumors of thefts. Of course, that might have just been a way for the nurses to keep patients from strewing their coats, purses, cameras, and crossword puzzle books all over the NICU. :-) And of course, another consideration is that your baby might be moved while you're away (see #4)--and your coat might not be.
   
   Toward the end of our NICU visit, we found out that there were actually LOCKERS that we could have been using. They were in the patient resource center, which also had free bagels in the morning and free water all the time. I don't know how much we spent on bottled water (hospitals are very dry) before we found out that we could just refill our water bottle in the lounge. But we had to actually go to the lounge--we had been told that it existed, but not what wonders resided within--to find this out. We also found out, just by asking around, that we got discounts in the cafeteria and the parking garage if we showed our NICU wristbands. Other patients, nurses, social workers, and other hospital staff are all good people to ask about these things.



3. It's okay to bring stuff from home to put around your baby's crib. We didn't know we could do this until we started noticing that other babies had cribs full of blankets and toys and signs and mobiles and, well, just about everything you can think of. Regulations about what you can and can't bring vary by NICU. Just be sure to mark your personal belongings with the baby's name; we nearly lost a handmade blanket that way. Fortunately, it was still in the "soiled laundry" bin and hadn't gotten in with the hospital laundry yet.



4. Your baby might be moved without anyone telling you. I was there a LOT of the time, and saw several sets of parents come back from lunch or a phone call and realize that their baby wasn't there. First there's a look of confusion--wasn't my baby in the last crib on the left? Am I in the right ward? And then stark panic. Other parents are usually very nice and will tell you that your baby has been moved to another ward, almost before you notice he's gone, and someone on the medical staff will certainly be watching for you to let you know, or they'll call your cell phone or pager. It's just that one moment of panic that gets you.



5. NICU nurses are incredible. I personally think NICU nurses have one of the toughest jobs around: they work with sick babies all day, every day. They have to deal with obsequious doctors who treat them like clerical help and hysterical parents who treat them like maids. They take breaks when they can, not when they want to. They work weekends and holidays and nights. And through it all, they act cheerful and professional. Wow.



6. However, keep in mind that the nurses are monitoring you. They're pretty subtle about it, but the nurses (and everybody else) are taking notes about you in your baby's chart. Again, depending on hospital policy and the particular person, they might write down ANYTHING. One of my Ronald McDonald House friends found out that one of the nurses had actually written down bits of private conversation that she had OVERHEARD between my friend and her husband!



7. ...and on a related note, you have no privacy. Well, actually, that kind of depends on where you are. In the NICU in the city where we live, the medical staff were very sensitive about privacy, and waited until opportune moments to ask us questions like "Have you ever been pregnant before?" (They asked me that question while my husband was in the bathroom.) We weren't supposed to look at any of the other babies in the NICU, and we couldn't ask questions about them.
   
   In the other NICU, however, people would just show up and ask for your Social Security number or start giving you information about your baby--loudly--without really worrying about any of those pesky HIPAA rules and regulations. I overheard, without "overlistening," the conversation in which the parents of the baby in the next crib were told that their baby wasn't ever going to get any better, and that they needed to decide what to do. In my opinion, it would have been better for everyone if the palliative care team had, oh, I don't know, TAKEN THE PARENTS TO A PRIVATE ROOM for that discussion, but they didn't.



8. Related to both of those things, you have every right to express yourself if you think your privacy is being unduly violated. It might even help. To be honest, I didn't ever say anything about the privacy stuff, even though the relative lack of privacy in the second NICU bothered me after the extreme privacy in the first one. But I saw (and heard) other people complain, and it seemed to work. Frankly, it just wasn't something that bothered me all that much after several months of having people I barely knew asking if I was going to breastfeed, and particularly after the whole birth thing, where lots of people I'd never seen before got to see ME, real up close and personal. After all that, it just didn't seem like that much of a privacy violation for someone to ask if my husband and I were related by blood (our son's genetic condition is very rare--except in cultures where close relatives marry).
   
   Even if it's not privacy-related, you can bring up anything that bothers you, and someone will either try to fix it or tell you why they can't. Just don't be obnoxious about it. If you need a chair, ask for one. If it bothers you that there's a construction crew working outside the window that looks right in on the chair where you're trying to breastfeed (yes, this really happened to the women in the next ward over from us), ask somebody to do something. If the incessant Christmas music is driving you absolutely up the wall, ask them to turn off the radio or at least change the station.



9. Talk to other people. Unfortunately, I didn't figure this one out early enough, but it really helps to talk to the other parents and staff, or even strangers on the Internet. The other parents are going through the same things you are, and believe me, it will help to talk about it. If you need help, ask. If you think you're experiencing postpartum depression, for goodness sake call your doctor. But don't close yourself off from everyone else. It will just make you feel worse, even if you don't see how that's possible.



10. Most of all, you are going to need to be very brave. Yes, there are people who are there to help you, but you're going to have to be your baby's advocate. You might have to stand up to doctors, and nurses, and lactation consultants, and insurance administrators, and other people who are accustomed to being right and don't like to be told otherwise. You will see your tiny baby, who you don't even know yet, go through some painful things. You will hear your baby cry in pain (on the plus side, you'll never mistake a my-diaper's-wet-and-by-the-way-I'm-really-bored whine for an I'm-in-pain wail again). You might see other babies sicker than your own, and some of them might not make it, which will make you worry even more about your own baby. You might have to stay in an unfamiliar place, far from home, where you don't know anyone. And all of that can be scary and difficult to face.
    
    But eventually, you will most likely go home with your baby. Even if it's not on the timetable you were expecting, even if things are drastically different from how you thought they'd be and wanted them to be, you will most likely go home with your baby. And a few months from that time, all of the rest of it will seem like a distant dream that happened to someone else.

(I've been planning this post in my brain for many months now, but it took this week's Group Writing Project over at ProBlogger to actually get it out of my brain and onto the keyboard.)